I just don't get it... (there's a negative tone to this post BTW)

[Jason732]

Ok, so this new neurologist wants to stick to a diagnosis of Transverse Myelitis rather than MS. I thought the criteria for transverse myelitis was a single incident, not multiple incidents. I went from April to July without any symptoms at all and then in July I started having the symptoms that I went to this neuro for in the first place. That, to me, would indicate 2 separate incidents, not one.

Either way, it doesn't matter. I called my insurance company to find out what the process involved to get started on Avonex was and they told me that it's a medical benefit rather than a pharmacy benefit, so it applies to my standard medical plan of $2,000 out of pocket and then they split it 80/20. That's not even an option for me, so I might as well not even attempt to get on a DMD until they have an oral dose of Avonex so that I can afford it.

This is just so frustrating! I thought "finally! progress!" and now it all seems like it's for nothing.

Just for giggles, I've started logging all of my symptoms. I'm also going to pull as much information on the difference between TM and MS as I can and ask as many specific questions as I can concerning why he feels that the TM diagnosis is more appropriate than MS at this point. The reason for that is that so far, what I've read says that there is a difference in the way TM is treated than MS.

This just feels so futile...

[Lulu54]

oh and one other thing and then I promise I will leave you alone for a while - you said your insurance considers this a medical benefit and not pharmaceutical.  My insurance is trreating is like a prescription drug which it is.  I have a $50/mnth copay which still adds up to $600/year but certainly is worth it.

Perhaps the person you talked with misunderstood?  Avonex is definitely a prescription drug and should be part of your prescription coverage.  

Lulu

[Lulu54]

J- I have to admit I don't know much about anything these days so I went looking at info on TM since several people have mentioned it in their realm of possibilities....  from the TM org website I found something that is of interest to me - that being the statement that people with TM and relapses usually have something like MS causing it.  Here's the section that caught my eye-  Lulu

"The majority of people with this disorder experience only one episode although in rare cases recurrent or relapsing transverse myelitis does occur. Some patients recover completely, then experience a relapse. Others begin to recover, then suffer worsening of symptoms before recovery continues. In all cases of relapse, physicians will likely investigate possible underlying causes such as MS or systemic lupus erythematosus since most people who experience relapse have an underlying disorder"

[Lulu54]

Jason,
I can certainly understand your confusion and frustration since you doctor appears to be confused.  TM or MS - it would be nice if he could make up his mind and start treatment for you.  

Note - I don't know about avonex, but REBIF has free treatment for the first year for everyone who picks it (in the US) - Avonex has patient assistance, but I don't know the details.  TEVA pharmaceuticals also has a progam to assist with the co-pay costs from certain pharmacies.  

Keep searching and your answers will come, Lulu

[Udkas]

Hi again Jason,
I think your Dr has diagnosed TM on the fact that you do only seem to have lesions in your spinal cord.  Also with TM you often get back pain.  The lesions must indicate TM as lesions for MS are different.  

With my case my flares were just from tiredness etc. but now they do think I have deteriorated and have had a new attack as damage is showing up that wasn't before and I have the clear sensory line.  Unfortunately for me I do have the typical bladder and other problems...

But yes TM can reoccur, although it is rare and you are right the treatments are differrent for TM from MS.  My problems are mainly nerve pain, burning, numbness, pins and needles in my buttocks and stomach, feet etc. and my legs go weak, but my left leg is way worse than my right and it goes all dead like it's gone to sleep and real heavy, sometimes it feels just like i can't move it at all as the sensation is all weird.. (hard to explain) but scarey.

Good luck, I hope you get some answers, I will have my latest MRI results next not this Mon but following, so I am not sure if lesions will show up or not...

Please keep me posted on what your Dr has to say as I am very interested, I have a list of  million questions for my neuro this time.

Cheers,
Udkas.

[Jason732]

Thanks for the information, Terry. I hope I can put it to good use soon, but that depends on _if_ I have MS or if it's TM...

[Jason732]

Hey Udkas,

I've so far had 2 separate spinal lesions show up in MRIs, but none in my brain. The first was in February of 08 in C3-C4 and then we had an LP done and it was positive for O-bands. After treatment with solumedrol, the symptoms went away in the end of March/beginning of April of 08. Then, in late June, early July of 08, I started having problems with constricting rib pain, among other things, but bladder/sexual dysfunction hasn't been included in that list. I waited, based on my previous neurologist's advice, to get an MRI until recently when I had just had enough. I went to a new neurologist and they did an MRI on 11/24/08 and they found a new lesion in T6. I've had blood work done time and time again to look for anything else and it always comes up "normal", for what it's worth.

I don't understand why they said they wanted me to start Avonex if they still think it's transverse myelitis. Avonex isn't indicated for TM anywhere that I can tell, and if it's not going to do any good, why go through the trouble of (and the side effects of) getting it?

Either way, I'm going to try to get clarification from them ASAFP...

[Udkas]

Hi Jason,
I have been told by my neuro no 2 that in his opinion I have TM.  I thought too that I had separate attacks and he believed that this was just flares from a single episode 13 years ago.  You still get flares when you get tired, stressed etc. just like you do in MS.  Neuro 1 told me he thought I proberly had MS but MRI was clear. I was also confused and still thought it was most likely from MS not TM.

I have since had what I thought was another attack, so went back to my new neuro and he still believes it's TM but he does think this time I have had a new attack.  So yes although it's rare TM can reoccur and it some cases what starts out as TM then ends up progessing to MS.

TM lesions are different from what I can gather to MS lesions to look at (and as the name suggests they usually are transverse in nature.  Patients with TM usually have more of a pain factor to their symptoms, onset is usually sudden.  There are different types of TM as well, often if it reoccurs they look for another underlying cause like Lupus etc,  Patients with TM usually have some bladder dysfunction/sexual dysfunction, often there is a clear sensory line from a certain level.  

Do you have any lesions showing up on MRI?  Obviously your exam must suggest spinal cord lesions and depending on where the lesions are is what is affected, with TM they are often in the thoracic but if higher up they can affect your arms and even your breathing.

I thought MS for myself but now I have done all my reading I actually think my new neuro is right, I am awaiting MRI results at the moment.  Last MRI was clear.  I know I have got worse this time round but the neuro thinks that too but still says TM.  I did have optic neuritis (i think) 13 years ago so after an eye test yesterday and the eye guy commenting on my abnormal optic discs I have decided to get my old records from the ophomologist (sorry can't spell that word) which is a bonus and I will take them to my neuro to see about Devics disease as he doesn't have past history.

Hey isn't that cool, I didn't know you could just get all your medical records providing you sign a release form.

Good luck with your diagnosis, I would be interested to hear what your neuro has to say and why he/she suggests TM.

Cheers,
Udkas

[saveone]

Recently during the DMD poll I saw one individual did not take DMDs because of cost.  It may have been your post...not sure.  However, there are a lot of ways to get your meds at little or no cost.  I posted this info on site.  Here is the link:

http://www.medhelp.org/posts/show/696145

Hope this helps
terry